Vitiligo – Not a Social Taboo! #Lets Fight Vitiligo

Vitiligo or Leukoderma – commonly referred to as white patches may be mere spots and patches for one but definitely, for some, it has stories which change their life. Let’s take a stand against it and not treat it as a social taboo

When I was a child, I used to visit my grandmother in the summer vacations. My grandparents had an old British style Bungalow, which was later razed to offer the place to 100 flats in place of one big house. But apart from the big house I also remember the milkman who used to get two large jerrycans. These were obviously filled with milk. I used to wait for him to come. As a child, I could not figure out why his hands were not like the others. He had white spots on his hands which ran up to his elbows.

I was so enamoured by the dual colour of his tone and often wondered how he got it. Then one day, I let my imagination run wild and I came up with a reason behind the milkman’s dual colour skin tone. I assumed that since he deals in delivering milk, he must be dipping his hands in the jerrycan to get a good hold of the measuring ladle. And while doing so some milk would come on his hands. Since he was in the business for some time now (or from the time I remember seeing him), I assumed that over the years the milk caused his hands to change. I never asked anyone in the family and always heard everyone talking to him with respect.

I also have an aunt who has the same dual skin tone. She is very beautiful inside out in literal terms. She has never let the dual colour of her skin affected her and has a great career. She walks with a confident stride and people respect her for what she is. She is a doctor and she has never had to lose control of a situation just because of her skin colour.

Many years later, while in college I came to know that the people who had dual coloured skin were not blessed but actually had a disease known as Vitiligo. Not that it mattered to me. But I was very happy about the fact that I was given an upbringing where we were shown how to respect them and that they are like any one of us. We were never encouraged to shun them or talk to them badly.

So what is vitiligo and why are people with vitiligo shunned or bullied?

Vitiligo affects about 1% of the people around the world. Why it happens is because the cells – melanocytes, which are responsible for the colour of the skin get destroyed. Since the melanocytes stop producing melanin (pigment responsible for the skin colour), certain areas on the skin start to lose colour or become white. The skin can lose colour from any area on the body like the sun-exposed areas on the hands, arms, feet and face. Also, other areas which are not too visible could be affected like the nostrils, mucous membranes, back of the eye, inside the ear and genitals. Some may also have white hair in case the areas involved is hair.

According to various researches, it has been shown that vitiligo causes serious psychological effects on the person who has it. Studies have shown that over 50% of people with vitiligo become victims of the negative effects the disease. Many suffer from

Depression

Anxiety

Emotional burden

Withdrawal from the society

Feeling disfigured

And also avoid any sort of physical activities

Low self-esteem

A feeling of being a misfit

Treatment of vitiligo depends on the severity, size, location and number of the patches. Treatment ranges from surgical, medical to a combination of both. Medical treatment usually pertains to the application of topical creams, depigmentation and ultraviolet therapy. While surgical treatment involves skin grafting and melanocyte transplant.

But the good news is that the people who have vitiligo are as normal as you and me. And trust me, vitiligo is not contagious. So next time around when you see a person with vitiligo rather than making them conscious about the fact, go give them a high five and a warm hug. Am sure they will love your expression.

Here are stories of some people who have never let Vitiligo come in their way. In fact, they have seen the best in it and moved ahead with it and today are more confident than you and me!

Winnie Harlow: A Canadian supermodel and also a public spokesperson for Vitiligo. But before becoming a supermodel she had a hard life. Her skin condition – vitiligo affected her to the extent of being bullied in school. She used to be addressed as a cow or a zebra and this harassment often led to her changing schools many times until she dropped out of high school. At this point, she was so frustrated that she thought of committing suicide. But things changed for her when she was discovered by America’s Next Top Model host Tyra Banks. Soon she became a supermodel and also a TED speaker where she spoke about Vitiligo. Now she is a woman who brims with confidence.

Rahul Sharma: Civil engineer by profession and a blogger by choice, Rahul’s first encounter with vitiligo was in the year 2000. He had just returned home after a cricket match when his mother noticed white patches on his knee. Like others, Rahul too did not have it easy. The vitiligo started to spread and with this, his self-esteem and confidence started to drop. Despite a 2 year through preparation for IIT exam, he could not clear the entrance exam and thought of committing suicide. At this point, his parents stepped in and had long talks with him and on their persistence, he joined NIT Kurukshetra, a decision which he does not repent today. Once in college, he was again at a setback with his self-esteem and thought no one would talk to him or be friends. But one day he realised that he has been very unhappy and ungrateful despite a good family, friends and college. With nothing to worry, he is deep into worry. That was the moment he realized that he should be grateful to God. This also happened to be the turning point. Vitiligo did trouble him after that, but he learned to be calm confident and above all grateful to God.

Kartiki Bhatnagar:The vivacious 18-year old developed vitiligo at the age of 7 after being diagnosed with thyroid. Suddenly all her friends who used to play with her stopped paying with her in a fear that they will also get vitiligo. While her parents performed havans for the white patches to vanish Kartiki tried to cope up with all the taunts regarding her uneven skin tone. Until one fine day when her friend looked at the patches on her feet and said that he loved the dual colour of her skin. At first, she was taken aback. Here she was fighting this skin tone and her friend actually loved it! This was the turning point in her life. Till now she used to see these spots with disgust but now she honoured them. As suggested by her friend she started doodling and painting the spots in different ways. She was enamoured by the designs, shapes and scenes which her body presented after being coloured. With this, she gained a newly found self-esteem and now sees patches in a different way. She has a blog known as “Embracing Life”, where she talks about her experience with vitiligo along with a message for body positivity.

Nieyati Shah:Her first tryst with vitiligo was at the age of 7. She was on her way back from school and fell from the auto rickshaw. That moment she developed a white scar on her forehead. A scar formed by an injury usually heals within two weeks, but Nieyati’s scar refused to heal and other such scars started appearing on other parts of her body. Her friends at school and home stopped playing with her because they thought that the condition is contagious and they may also get affected. This led to low self-esteem and Nieyati started becoming lonely. As she grew up people started asking uneasy questions and she stopped going out of the house and attending functions. While her parents were looking for a suitable boy, she was clueless about her own life. It was then that with the help of family and friends she started thinking for her development and began to think about career goals rather than relationship goals. She changed her job and took up a job in a hospital while simultaneously she learned English and completed her Post Graduate Diploma in Hospital and Healthcare Management. Since then she has been working with doctors and big hospitals. She also completed her MBA and now there is no looking back for her since she is self-sustained, self-dependent and above all confident. What she feels ashamed about is that even in the 21st century she had to suffer a social boycott because of her vitiligo.

I don’t know any of them personally, but their stories and their efforts to deal with their condition are great. Each one of them suffered from low self-esteem and at some point, they had that Eureka moment when they focused more on what they wanted in life rather than life wanting from them. There are many others like them still battling and waiting to find their EUREKA MOMENT!

Well, about me I can say that I am a certified dentist, healthcare analyst, medical writer and above all a mother of a 6-year-old. Most of my day to day activities revolve around her and she is my inspiration to start this blog. As a mother, I experimented with a lot of new things for my little one in a quest to find the best for her. I just want to share my experiences of being a happy and content mum.

One of my friends from school days had Vitiligo and had seen her trials and tribulations to deal with the mental trauma of it from close quarters. Unfortunately, she could not continue her schooling and was married off (in literal sense) early in life, compromising all her sanity (I presume)
However, it was heartening to see the positive outlook of Rahul, Niyati and Kartiki. Salute their indomitable spirit.
Thanks for sharing, Shubhra.